Thursday, June 30, 2016

Progress, Part I

Saw the new neurologist for the 2nd time yesterday. During my 1st meeting with her (in May 2016) I had asked to see a new neurosurgeon. At the time, she had told me most doctors don't take on new patients because they don't want to deal with the work of another doctor. She had said she would "see" if a neurosurgeon was available and would be willing to take my case, but she couldn't guarantee this would happen. I left her office feeling extremely frustrated because I couldn't go back to my former surgeon because my not so good experience with him: Photos of shunt placement.

I decided to contact the social worker who I had seen in 2014 - 2015 to help me deal with the trauma I had experienced with my brain injuries. I went to see the new neurologist yesterday and she was like a different person. I had expressed my need to see a new neurosurgeon and to have a shunt series done. Without hesitation she gave me a referral to see a neurosurgeon at the hospital and to have a shunt series before I left the building that afternoon.  I'll see her again at the end of September. I have an appointment with the neurosurgeon later summer and I asked my social worker to call him before my appointment. Having the social worker advocate for me expedited the process of getting new x rays and a new surgeon. This past Monday, I had a follow up with my eye surgeon who corrected my eyesight in March 2015. As far as the tests go, my eyes are in good health and have adjusted well to the surgery. I haven't had any issues with my right eye drifting to the right. It did do some drifting from March 2015-April 2015. I haven't had any since then. I still have some double vision when I look above my glasses, this doesn't affect my ability to look straight ahead, as I have single vision when doing so.

Saturday, June 18, 2016

A Good Day

Today was a better shunt day. For the last two months, I've had frequent nausea and pain/throbbing on the shunt valve multiple times during the day. Sometimes, I have pain on the top left part of my head which I believe is from the injuries I had in 2014.

Today was a better, as the pain on the shunt valve wasn't as strong as it's been. For example, today the pain on the shunt valve has been a level 5 which is better than it was a few days ago, which was a 10.  I didn't feel any pressure in my forehead today which was good.  I've been playing phone tag with my neurologist and will have an appointment with her soon.  I'll also have a new shunt series which will show how my shunt is working.  The x rays will show whether the shunt is broken and the CT scan will show how the shunt is functioning.  I expect my new neurosurgeon whenever I see him/her later this summer won't misread my x rays/scans like my last doctor did.

Not sure why I'm still have the shunt pain issues. Maybe as I may have mentioned in previous posts, it's because of the type of shunt I have....I just don't know yet...We'll have to see once I get the images back.

In the meantime, I saw through an online support group the Hydrocephalus Association is having a conference in Minnesota this weekend.  I found the history of hydrocephalus online which is interesting: History of Hydrocephalus